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Weren profile image
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I've had AFib for several years. It was diagnosed in the hospital the day I had a heart catheterization and stents put in, but I suspect I've had AFib way before and thought it was just anxiety. I was put on 88mg of Sotalol and recently the dosage was increased to 120mg 2xs per day. At 1st I was feeling better, but recently the AFib seems to be increasing. I have been on the increased dose for 2 months now. I wear a Fitbit, which tracks the AFib. The doctor suggested not wearing the Fitbit as it seems to be increasing anxiety. I am 71 and have a large history of heart disease on both sides of my family. I've lost 3 siblings and my father all at early ages related to heart disease. I'm scared as my AFib increases, I also have high blood pressure and diabetes. Looking for others who have AFib, this scaring the heck out of me.

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Weren profile image
Weren
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30 Replies
Paulbounce profile image
Paulbounce

Hi Weren.

Welcome to the forum.

We all felt scared when we were first told. There's no need at all - promise you that. The people who need to worry are the people who don't know they have it - they are a stroke risk waiting to happen. However, once you know you have it there are meds and treatments that will help you no end. You're on one now - Sotalol (same as me).

It's not half as bad as think it will be. Your HR rate can be controlled and afib is NOT heart disease. It is just your electrical signal misfiring.

I've had it for years now and it's not a fraction as bad as I thought it would be. It's not going to kill me and I lead a normal life. Sure you may have your ups and downs but nothing you can't deal with.

I had a FitBit as well. I kept checking it all the time. Half the time the readings were incorrect and worried me sick. Flushing it down the loo is the best way of dealing with that one heheh.

You'll be fine - stop panicking.

Enjoy your weekend.

Paul

Weren profile image
Weren in reply toPaulbounce

Thanks for the welcome Paul 😊 I've had AFib for years, it's not new to me. The 1st month the doctor upped my Sotalol it seemed as though I was much more relaxed and didn't have as many episodes, but lately it seems to wearing me out. This week alone it's been 5 days in a row and can last for 5-6 hrs.What are some symptoms I should be on the lookout for that I need to go back to the doctor? He explained that medication can work for a week or years. An ablation can work or not. Just not sure what to do at this point.

Paulbounce profile image
Paulbounce in reply toWeren

Hi Weren.

We are not medically trained on the forum and just give opinions based on personal experience. Ablation can be hit and miss and it's luck of the draw. You may need a top up or it could work for you. Check out Pulsed Field Ablation - it's the new kid on the block and what I would have if I could get one.

I think you should ask as many questions here as you can - you'll learn a lot. Personally I've learnt more on here than I have from my GP or cardio. Loads more.

Just my point but I think your GP is wrong to say meds can work for a week or years. They work for a lifetime - it's if your afib progresses then the effect is reduced. Others may disagree.

I would always contact a medic if I had chest pain / a prolonged period of a very fast HR / passed out. For me 125bpm for 4 hours and I would want it checked. Again others might disagree and say they would sit it out. Learn breathing technic's - slow and deep breathing. Find one on Google that works for you.

The forum is a bit quiet this weekend but I feel you will get quite a few more replies over the next 24 hours.

Paul

Hiya Weren,

Sorry to read of your cardiac dramas ... hopefully on this forum you'll get many thoughtful comments. Before I make a comment I'd be interested in who prescribed your AF medication .... your family Doctor, a Cardiac Consultant or an Electrophysiologist (EP) ?

The other question is what medication are you on (if any) for high blood pressure. Finally, how is your diabetes being treated.

Also, and you don't mention it but are you on any anticoagulants, i.e. Coumadin. All these questions I have innocently asked should have a bearing on folks replies.

An aside for your consideration. Whilst I use a tracker (Garmin) it doesn't tell me when I'm in AF. I use my Garmin more for sleep tracking (or lack of sleep or sleep patterns). For AF I use a Kardia 6L ECG device (Suggest you google it). I also use a Blood Pressure monitor which not only tells me my BP and Heart Rate but is approved (here in Britain) for detecting when I've hit the AF jackpot.

Yep, there is anecdotal evidence to suggest that all these tracking/monitoring devices are good for stirring up anxiety which in itself is a strange bedfellow for/with AF but if like me you are asymptomatic or have a tendency to be asymptomatic you are really NOT gonna know what's goin' on ... are you ? I use my devices as an outta surgery aid to capture statistical data on my condition for the use of my healthcare professional. You can use them occasionally or regularly BUT if you don't use them at all you are depriving your healthcare professional of an informal opportunity to see what is goin' on in your heart life and thereby denying him/her the opportunity to have more advanced professional medical tests done. I would put the Fitbit away and replace it with a Kardia 6L device and a BP monitor - if you haven't already got them.

I was diagnosed with paroxysmal AF in Jan 2010 (aged 65). At the time I was already on blood pressure medication and statins. My Cardiac consultant then added to this party bag of drugs, 5mg Bisoprolol and Warfarin (Coumadin to you guys in the States). I am still on the same medication the only difference is that my AF is now highly controlled - partly due to medication and partly due to lifestyle changes, i.e. diet.

I might add that I also have an AccuChek device to monitor my blood sugar. I do this because my fathers side of my family have a history of diabetes and strokes and AF. If I didn't use them at all or if I ignored them I'd have no idea what state my body was in given my family history. Do use these devices, keep records and make sure your healthcare professional has access to all your current data. DO NOT LOOK ON THESE DEVICES AS ................"FRIGHTENERS" ......... look at them as friends who can help you overcome or at least challenge your medical issues. Yep, sure devices can generate anxiety in some people, especially with your own medical and family back ground - but it is totally unneccessary .... they are your friends and guides. Be grateful we live in a hi tech age when we have these devices to help us. They are helpers ... NOT frighteners.

John

Rainfern profile image
Rainfern

Welcome Weren. This forum has done so much to help me reduce anxiety levels and get things in perspective so I hope it does the same for you! My AF seemed to start quite suddenly in September last year, slipping quickly from paroxysmal to persistent. I've learned that so long as I'm on anticoagulant it's unlikely to kill me. And as someone with a history of heart surgery who panics at the smallest missed beat I have learned that a single day without practicing relaxation and breathing techniques and taking a half hour walk is simply not an option. I get a lot of symptoms and they can be scary if I let them. As for high processed foods - the other night even a humble pizza gave me a bad time! I was initially terrified of measuring HR and monitoring for Afib, but faced the fear and now take a daily reading while resting with Microlife Home A which is a conventional blood pressure monitor that also checks for AF. That way I'm getting to know the general picture without obsessing over details.

There's no getting away from the fact that AF can be life changing, but we don't need to let it steal our lives. There are some great people on this forum with far more experience and knowledge than me, so stick around and let us know how you get on!

Quilter43 profile image
Quilter43

It's scary. Mostly I don't think about it till something happens.Also scary with few symptoms as no clue to what's going on.Several family members had heart issues.attacks.strokes.passing out.needed pacemaker..so a decision factor..

Singwell profile image
Singwell

You have some excellent advice here already. I too use the Kardiamobile and check my BP regularly. I've had 2 ablations - the first under sedation only, which didn't work - the 2nd 11 months ago, which did work. Ablation can improve your symptoms, help you get AF less often, or send it off for a number of years. I'm hoping for the latter. There are no promises of a permanent 'fix' with ablation.

Medication. There are lots of options and it is a matter of trial and error to find the ones that work best for you. Diet ams lifestyle play a big part and also help us feel better about life.

Much of living with AF is about learning to manage it. We're all scared at the outset. Be gentle with yourself, make a start. Shout out when you need a listening ear.

Anniewee6 profile image
Anniewee6

Hi Weren. Apart from the advice already given I would add that I have cut out caffeine, alcohol and sugar. I eat home cooked foods and nuts and seeds, cacao nibs, fruit and vegetables. I also drink plenty of water to avoid dehydration. I have also made sure to go for a walk every day and am just starting Tai Chi. Keeping as healthy as I can and avoiding triggers is my approach. I also like to think that this healthy regime is of benefit in many other ways.

Paulbounce profile image
Paulbounce in reply toAnniewee6

Weren

Re-read Annies post. That will help your afib no end.

+1

Paul

Poochmom profile image
Poochmom

hi Weren

I see you are in the United States. You might want to do some research into surgical ablation. There is a doctor I. Texas, Randall K Wolf who is a cardiac surgeon specializing in AFib and does a mini maze with average 93% success rate with over 2,000 procedures under his belt. You can also join the Facebook group wolfminimaze or go to wolfminimaze.com for some great information and lots of hope to clear this beast. This procedure is way more successful and less traumatic on the heart than ablation. I had it done in June 2022 and have not had any problems at all since and had episodes every 5 days before hand.

Its good to have all information you can to make an informed decision on treatment. Most Medicare plans cover this minimally invasive surgery it’s not open heart.

Poochmom profile image
Poochmom in reply toPoochmom

I forgot to add that this procedure also clips the LAA eliminating the need for blood thinners. I am off all meds.

Weren profile image
Weren in reply toPoochmom

Thank you I joined the FB group just last week and feel a whole lot better knowing I can see others have similar episodes that I am having.

Weren profile image
Weren in reply toPoochmom

I've decided I'm going to contact Dr Wolf in Houston. I watched a few videos yesterday explaining the procedure. Also knowing blood thinners are only 60% effective and after the mini maze you do not need blood thinners. He explained the success rate is now 97%.

Paulbounce profile image
Paulbounce in reply toWeren

97% success rate!

Good odds to say the least.

Paul

Poochmom profile image
Poochmom in reply toPaulbounce

I may be wrong but I believe the 97% success rate refers to the chance of a stroke after isolation of the LAA. That reduces the risk of stroke from 60% to 97%. But still I was given a 93% chance of success with the WMM and it’s worked. So still great success.

Weren profile image
Weren in reply toPoochmom

Yes, you are correct. I stand corrected

Weren profile image
Weren in reply toPoochmom

As I read more I see there are different types of AFib. I do not know what type I have. I only know I've had it for many years. I take Sotalol 120mg, take medication for high blood pressure, have sleep apnea, hypothyroidism, I have had 2 stents put in as a result of blockages, and before that left carotid artery surgery. I have diabetes, which I was on a high dosage of insulin as well as oral medication. I have controlled my diabetes with diet changes 4 years ago and have been medication free for 3 1/2 years now. My cardiologist has been treating my AFib for several years now and sent me to the heart rhythm doctor in December. I did not enjoy hearing we will increase your medication and see if that helps, if that does not work we can do an ablation, but that doesn't mean you won't be back in AFib. You will be on blood thinners the rest of your life and most likely AFib meds. Between the doubling my blood pressure medication and my Sotalol the past month my quality of life has changed and I'm tired all the time and inflammation in my body has increased dramatically. My AFib lately has been increasing. What might work for some is not working for me.

Poochmom profile image
Poochmom in reply toWeren

Definitely talk to Dr Wolf. He will Be able to help you. Don’t distress, there is very few reasons that you wouldn’t qualify for the WMM. Sleep apnea is a trigger for AFib for sure. I know the stents wouldn’t stop you from qualifying. I couldn’t tolerate the meds either. My AFib kept getting worse and worse. I started off with every two months and in three years time by the time I went to Houston my episodes were every 5 days. Thank goodness I went when I did or I probably would be persistent or permanent by now. I couldn’t take Flec, only PIP. It was miserable and I was always anxious as to when the next episode would come and would the Flec stop it this time.

You are headed in the right direction. Run don’t walk to Dr Wolf. 😉

Poochmom profile image
Poochmom in reply toWeren

also ask Sandi some of these questions over on the WMM Facebook page. She is a retired RN, had the WMM and she is very knowledgeable on it.

Poochmom profile image
Poochmom

Believe me Weren, if you decide to go ahead with the procedure, you will not be sorry. Dr Wolf is everything a doctor should be. And yes, no more blood thinners for AFib even if for some reason another arrhythmia occurred away from where the mini maze is performed. Most lone AFib, meaning no other heart disease, is vagal AFib which is what this procedure treats. The whole experience was phenomenal for me! Dr Wolf gave me a 93% success chance and I’ve been AFib free since. I’m glad you are at least having a virtual with him. It will answer any questions you have and does not commit you to the procedure. Great luck!!!!

Weren profile image
Weren in reply toPoochmom

My paperwork is done just waiting for my virtual with Dr. Wolf. It was 3:00 am and now almost 5:00 as I lay here another night being woke by AFib I need to be at work by 6:00 ... I hate these episodes.

I don't think it's selfish to want some quality sleep and to feel refreshed up on awakening.

Thanks for listening and respond. Hoping to get some relief soon.

healingharpist profile image
healingharpist

Hi, welcome, Weren, It is definitely scary at first, but IMO, Job 1 is to begin any and all anxiety-calming techniques you can do. I believe anxiety triggers more AF episodes than any other cause. I am in the medical field, and in psychiatry we use Cognitive Behavior Therapy, which has proven very effective--give that a try. Are you able to feel your heart when it is irregular? Have you ever used flecainide when an episode starts (what they call the Pill-In-Pocket approach)? It is very effective for my episodes. Daily metoprolol keeps my heart very stable, and it contains an ingredient to calm anxiety. But all the natural methods people here suggest are helpful: walking, breathing slowly esp. if you purse your lips while exhaling, reading uplifting books, listening to therapeutic harp music, and EFT (tapping) which has free videos online to learn the tapping technique which is a non-invasive method which activates the acupuncture points, and it's used by millions of people.

Just some ideas, and I hope and pray the best for your healing, Weren! Cheers, Diane S.

Paulbounce profile image
Paulbounce in reply tohealingharpist

Hi Healingharpist.

I haven't heard of EFT before. Sounds good and is worthy of further investigation. For others like me who have not heard of it here's a copy and paste about 'tapping'.

Paul

---------------------------------------------------------------------------------------------------------

EFT (Emotional Freedom Techniques), also known as tapping, is a holistic healing technique that combines elements of Eastern and Western approaches to psychology and healing. It involves tapping on specific points on the body while focusing on a specific issue or problem in order to release negative emotions and promote emotional and physical healing.

The technique is based on the principles of acupuncture and acupressure, and it is believed that tapping on these specific points on the body can help to clear energy blockages, reduce stress and anxiety, and promote feelings of well-being. EFT can be used to address a wide range of issues, including anxiety, depression, chronic pain, phobias, addictions, and more.

EFT tapping involves a specific sequence of tapping on meridian points on the body while focusing on a particular issue or problem. This is typically done with the guidance of a trained EFT practitioner, but it can also be learned and practised on your own.

Research has shown that EFT tapping can be an effective therapy for a variety of emotional and physical issues, and it is becoming increasingly popular as a complementary therapy alongside more traditional approaches to healthcare.

healingharpist profile image
healingharpist in reply toPaulbounce

Here is a link to the EFT World Summit going on now. Nick Ortner is the founder, and a good name to research. You can use EFT technique for relieving a huge list of ills and difficulties, both physical and mental. But this link leads to some free tapping sessions for "worry" on this particular date (as part of the World Summit); you can tap along with the speaker. It uses the meridian points that are used in acupuncture and acupressure treatments, is painless, and can be very effective, esp. for anxiety. There are also some websites that use EFT specifically for Atrial Fib, worth looking at.

Hope this opens for everyone: outlook.live.com/mail/0/inb...

Peace, Best wishes to all of you... Diane S.

Paulbounce profile image
Paulbounce in reply tohealingharpist

Thanks for sharing that Dianne. Very useful indeed.

May I suggest it's worth starting a new thread with the link - it would be very useful to other HU members. I could soon whip one up but you could reply to the comments? One, you have more knowledge about it than I do and secondly, I have so much to do. I would soon draft a post up though then let you take over.

Good to go? Deal or no deal?

Paul

healingharpist profile image
healingharpist in reply toPaulbounce

Good idea--go with it! Diane

Paulbounce profile image
Paulbounce in reply tohealingharpist

Great Diane. I've been so manic today with work today that I need to relax a little. I'll most likely do it tomorrow now. I'll tag you in the thread and if you could answer the questions it would be great. I've got so many projects on the go at moment it's finding the time. If there is a big response you may need to set aside an hour or so to reply. I'll be following the thread and will learn from it too.

Thanks a lot Paul

Paulbounce profile image
Paulbounce in reply tohealingharpist

Done it ;-)

Weren profile image
Weren in reply tohealingharpist

Thank you for the suggestion Diane. I think you are correct about anxiety can be a trigger for an episode. I have noticed when I learn something awful has happened in our family it can trigger my AFib. To answer you question about "Are you able to feel your heart when it is irregular?" Most definitely! I remember years ago when I was in the hospital I had a heart catheterization when my stents were put in. I was in recovery and the nurses asks me "can you feel that?" At 1st I had no idea what they were referring to and they asked me about the way my heart was beating. My response was Yes, but I just ignore it and hope it goes away as it wasn't new to me. I think that is when I was diagnosed with AFib and put on the Sotalol and blood thinners, but nothing else was said about it until I brought it up at a check up a few years later with my cardiologist when the episodes started becoming more frequent and lasting longer. As far as "flecainide" it was never mentioned. I can remember being on "metoprolol" many years ago, but I don't remember the reason I was put on it. I will be sure to research "EFT" and give it a try. Thank you very much.

Weren profile image
Weren

Thank you all for stearing me in the right direction. My WMM is scheduled for December 6th.

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